Thursday, April 29, 2010

Labs and Swelling

Yesterday we had labs. They were suppose to be the day before but God orchestrates. The day before yesterday I decided it was too rainy to go anywhere. I didn't want to leave the house. So I didn't. We woke up yesterday though, and rain or not, we had to go to Seattle for labs. (Pictured above of Seattle Childrens Hospital). Gary had a funny start to the day. He came down, said, "Mowning Mom". We exchanged kisses. He crawled up onto the couch to watch cartoons. All was well. He watched one episode of Dora. So 30 minutes had gone by. I glanced over at him to see a slightly different looking kid. His face was swelling. It wasn't dramatic but enough for me to notice. I did an examination. His fingers, especially his pinky were also swollen and a bit redder than usual. This is always the fun part. (Think I may have typed this very sentence before). I need to try and figure out if we are just having a bad day or are we about to have a break thru flare. MY definition of a break thru flare would be in regards to his medicines. Up till today, he was looking great. It was determined we would not run another cytoxan treatment to see how he did. We are not even due for a cytoxan infusion if we were going to be continuing them. Since I was headed to the hospital for labs anyway, I entertained going and pulling out the docs again (we pulled one out last month for his hemorrhaging capillaries in his cuticles). I don't like doing this because I often get the "shrug" and the "I dunno's", so what is the point. As the day went on it didn't get any worse. I didn't have a nurse or doctor check him out. I did however call when I got home because something was just nagging me. I called and left a message asking for a nurse to call me back with the results of his labs. I told them I was a little concern with some swelling and active rash going on. If his labs were ok, then I would give another day or two to see how he does.

They weren't good.

A few have popped up. His ALD went from 6 to 11. His AST went from 43 back up to 52. His white cell count is really low but I am not surprised by that. That is from the chemo's including cytoxan. There were a few others that were up. With the low white count just confirms with stomach flu going around school to stay out of the hot zone. Anyway, we are going back in today at 3:30 for a clinic appointment. I am not sure what they are going to want to do. Maybe pulse him with steroids. Maybe give it a little more time. It drives me batty trying to figure out why. Is it sun exposure? Is he so intolerant of the sun that I shouldn't let him be out there? Is it really his disease breaking thru the meds? ? ???? ?????

"Wow, he looks good."
How kind of you. You look good too. Yes, it is such a nice thing to say. What do I want to hear? "Wow, he looks terrible." ? No of course I don't want to hear that. I have had issue with this for awhile LOL. Because it is ridiculous to take any kind of offense, which I don't, but. But I am the one griped by fear. I am his mother. I have to sit here and rationalize every whimper, every cry, every dot, every rash, all the swelling. Rationalize it. Come up with what it could be instead. He woke up from a nap on Tuesday when we were suppose to get the labs done, crying and screaming, saying Ouchie. He wouldn't let me touch him. Nothing I did helped. It reminded me of day one, when he would lay there and just cry and cry. I feel helpless and worthless. I rationalize it, "O all kids cry when they wake up from a nap. They are just mad because they are still tired." Yeah, well add "ouchie" and clawing at your legs and arms and neck because you are burning and itching is not something all kids do. But he can't put the words together because he doesn't even know how to make a proper sentence yet. I can't wait for the day I will be able to ask him, "what are feeling, where does it hurt, what kind of hurt, what can I do to help you?" And he will be able to tell me.

So I got it. Instead of "WOW he looks good!", I prefer, "Looks like he is having a good day : ) !"

1 comment:

I hate to hear this about Gary! It makes me cry for you and him. Kya use to be like that when she needed a steroid pulse. You could just tell it in her actions, her looks, her attitude! Everything gave us the signs. That is why they did so many because she responded so well to them and it just took a little longer to taper her off of them.

I signed her up for Kiwanis T-Ball today! I am so scared and excited that I am sick. She wants to play and it is non-competitive so they said she could give it a shot! I just sit back, take a deep breath, and fight back the tears of emotion.

We are praying for you guys daily! I will say a special prayer right now for both of you! I will say that you can tell when Kya has been in the sun! It really affects her. We just have an absolute no sun policy from 12-4! It is not fun, but it has worked so far!

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